Spanning the spectrum: Reaching and teaching autistic kids

Justus is a cute little 5-year-old with light brown hair, impish features and an infectious grin.

He loves to watch television. His mother recalls a sleepy Saturday morning when she awoke to the sight of her son staring intently at her from just inches away.

“Mom!” Justus intoned. “Does your heart burn with holy fire?” His mother nearly rolled out of bed with laughter. Later, she learned he’d been watching a televangelist.

The spunky kindergartner also enjoys game shows. He has been known to react indignantly
to perceived injustices from his parents or teachers with a scathing pronouncement: “I win $400,
but YOU GO HOME WITH NOTHING!”

The little boy also has a kind streak.

“Good for you, Timmy!” Justus recently encouraged one struggling classmate. “That’s the best capital D yet!”

Only a year earlier, Justus’ vocabulary was limited to five words, because this bright little boy is autistic. The dramatic improvement in his language and social skills serves as testimony to the efforts of devoted parents and a team of specially trained teachers and specialists working through the Riverside County Office of Education’s Reach Autism Program, including an aide who supports the boy in his kindergarten class.

The Riverside program—and others like it—are expensive to administer and hard to recruit for. The need for such programs is rapidly increasing at the same time that school district budgets are shrinking. How will the California public school system cope with this rising strain on its already
overtaxed agenda?

A baffling disease

Cases of autism—or, more accurately, Autism Spectrum Disorders—were “unknown in ancient cultures, or even in medieval times, and just ‘appeared’ some 60 years ago,” physician F. Edward Yazbak wrote in a 2003 article in the Journal of American Physicians and Surgeons.

In 1943, Austrian psychiatrist Leo Kanner studied a group of 11 children at Johns Hopkins Hospital and “introduced the label ‘early infantile autism’ into the English language,” according to the National Institute of Mental Health. The following year, fellow Austrian psychiatrist Hans Asperger applied the autism term to children in his practice who displayed impaired communications skills, lacked empathy and tended to be physically “clumsy.”

Autism is called a “spectrum” of disorders because there are a variety of symptoms and degrees of disability involved. ASD is defined by the severity of impairment. Children considered “low functioning” display clear-cut social and language impairment. Those who are “high functioning” are much less debilitated and—like Justus—may be highly intelligent but still suffer from severe social and communication deficits.

Since the 1940s, the incidence of autism has exploded exponentially, not only in the United States but in many other countries as well. Researchers are scrambling to find effective strategies for helping autistic students and possible causes for the skyrocketing numbers of children who are afflicted with ASD. According to the most recent statistics from the National Centers for Disease Control, nearly 1 in 150 children born today has or will eventually have some form of autism.

“That is a massive number,” says David Amaral. A professor in the department of psychiatry and the director of research at the University of California, Davis, M.I.N.D. Institute, Amaral studies the disease with a team of researchers. And, although ASD is the subject of worldwide investigation, as yet no one has definitively determined its cause or causes.

“We have every reason to believe there are multiple causes,” Amaral says. “Some causes are purely genetic; maybe that component has always been the same. Some causes may be environmental. We have a suspicion that there may be something related to environmental factors that have changed over the last 50 years.”

Amaral is not the only scientist still searching for concrete answers in a swirl of hypotheses.

“Research is really hammered: Which [explanation] do you pick?” he asks.

Programs that work

Statewide, a number of school districts and county offices of education offer services for autistic students. Two well-known programs are located in Southern California: Capistrano Unified School District—a 2007 CSBA Golden Bell Award winner—and the Riverside County Office of Education both maintain a curriculum tailored to the needs of children diagnosed with ASD.

“CUSD has served students with autism for decades, but it wasn’t until 1999 that the district began a Do-It-Ourselves program to create an in-house Intensive Behavioral Intervention program which encompassed both autism-specific ‘special day classes’ but also a department [composed] of an autism specialist and IBI tutors who provided intervention to students with autism,” says Judy Shades, executive director of Capistrano’s Special Education Division. IBI services focus on peer interactions, cognitive skills, social behaviors, imitation, self-help, language and communication, attention, appropriate play and independence.

The district’s realization that an increasing number of autistic students were being identified led to the creation of in-house programs where it had previously relied on private agencies, private schools and county programs to educate autistic students.

CUSD serves all students with autism from preschoolers as young as age 3 to adults receiving transition services at age 22. It also assesses infants and younger children in preparation for making program recommendations for those students’ preschool programs.

“Students are taught in their recommended placements, which include general education classes, resource specialist pull-out programs, special day classes—both mild to moderate classes and severely handicapped classes—nonpublic school placements and home placements,” Shades adds.

The district’s 58 school sites have autistic students at every campus and generally serve those students at the schools in their neighborhoods, although specific and specialized programs may not be provided at every campus.

A partial list of their programs includes the following:

• Friendship Builders: This IBI social-skills group with typical peer role models for preschool-aged students is offered twice a week for two hours each; the groups take place outside of preschool classroom hours.

• Friendship Connections: Another IBI social-skills group with typical peers as role models, this program is for kindergarten-age students. It’s offered twice a week for two hours each and, like Friendship Builders, takes place outside of classroom hours.

• BLASST Off (Building Language Academics and Social Skills through Structured Teaching): These preschool special day classes are for students with moderate to severe autism. The language-based classrooms maintain a two-to-one ratio of students to adults, with the teacher and independence facilitators all trained extensively in IBI strategies. Services occur within the classroom for 20 hours per week.

• Launch for Success: These special day classes are also known as structured SDC for students with moderate to severe autism. These language-based classrooms maintain a two-to-one ratio of students to adults, again with the teacher and independence facilitators all trained extensively in IBI strategies. Services occur within the classroom for 30 hours per week.

Elsewhere in the region, the Riverside County Office of Education saw a 45 percent increase in the incidence of autism from the 2002–03 to the 2006–07 school years. With its Reach Autism Program, Riverside is striving to provide the best possible services for all its ASD students. The Reach programs serve students from age 3 to 22. Students are taught in programs located at early childhood centers and elementary, middle and high school campuses through 14 Reach Autism classrooms located at eight school sites throughout the county; plans call for three more classes and one more school location before the end of this school year.

The Riverside COE’s components include:

• The MAP or Model Autism Program has a high ratio of staff to students and small class sizes, and teachers and instructional aides receive extensive ongoing training in best practices. Occupational and speech therapies are provided to all students.

• An IBI program, which provides individual therapy to students who have additional needs. These services are provided within a student’s home or in a clinic setting, as a support to the student’s full inclusion in a classroom setting. IBI supervisors also provide diagnostic and assessment services to support students with severe behavioral issues.

• Monthly parent education meetings and sibling support groups address the needs of autistic students’ families. Typically, 30–50 parents and family members attend these meetings, including a large number of non-English speakers. Translators are available for those who need their services.

• Staff, professionals and parents receive professional development services. Reach staff provide training for the “Certificate and Education for Students with Autism” program. Professional development staff are creating a training package to assist districts throughout the state in building their own autism programs.

The Reach Autism Programs and IBI providers collaborate with a number of agencies and school districts throughout Southern California. Some of these collaborators include the Inland Regional Center, which provides lifelong services to people with developmental disabilities; the Riverside County Special Education Local Plan Area that includes 20 school districts; and the University of California, Riverside, in a pilot research study. Similar collaborations also occur among Riverside’s professional development program, parent and family program, and a variety of organizations throughout the region.

Limited resources, growing demand

Both the Riverside COE and Capistrano USD routinely struggle with limited resources and worry about what impact potential state budget cuts will have on their programs.

“Running a quality program with fidelity and a high success rate is more expensive than a typical special education program,” says Rebecca Silva, administrator of the Division of Student Programs and Services for Riverside.

“The severe sensory and behavioral needs [of autistic students] necessitate a small class size. The severe communication and social deficits require a high staff-to-student ratio,” Silva adds. “However, unlike many other less intensive programs, students with ASD can make tremendous progress given the proper treatment, thus avoiding costly private services and contentious legal actions as a child
grows older.”

The Riverside program participates in fundraising activities and grant-writing to help offset increasing costs. Administrators are also considering establishing a foundation, a route a number of districts and COEs are taking statewide.

Finding and retaining teachers and aides who are properly trained in working with autistic children—and providing them with professional development opportunities—present additional obstacles.

“Working with families and students with autism is a very challenging and demanding job,” says Capistrano USD’s Shades. “The average teacher stays in an autism-specific classroom about four to five years. We provide an extensive amount of training [for our teachers], and it is very difficult when we lose a veteran teacher to another field of education.”

Riverside COE’s Silva agrees.

“The greatest challenges for our program include recruitment of qualified teachers and staff, and keeping up with the demand for services,” Silva says.

“Riverside County is one of the fastest-growing regions in California, and that includes growth in incidences of autism,” she continues. “Because of the growth in our area and the increase in demand for quality services, it has been a challenge to find qualified staff quickly enough to keep up.”

So, what are these children entitled to? How much assistance should schools provide? And who should pay? These are questions school districts, educators, parents and society must wrestle with, at the same time that science seeks prevention or a cure.

One school board member, mother and activist offers this proposal:

“We must help school districts build programs to meet the needs of ASD children in their local public schools, as this is how you build societal understanding and tolerance,” says Terilyn Finders, a board member at Las Virgenes Unified School District in Calabasas.

“From the earliest ages, we must show children that all are to be respected, and they can learn and work and play together,” she adds. “Today’s students are tomorrow’s police officers, doctors, nurses, teachers and librarians. We build a society that accepts uniqueness and difference when children of all abilities can learn side by side.”

Marsha Boutelle (mboutelle@csba.org) is a staff writer for California Schools.